What are PUVs?
PUVs, or posterior urethral valves, are excess flaps of tissue in the urethra (tube from the bladder to the outside of the body). This is a congenital condition that happens only in boys. This tissue can block or reverse the flow of urine and can effect all parts of the urinary tract, as well as leaving very little amniotic fluid for lung development.
What causes PUVs?
At this time, no one knows exactly what causes PUVs. It occurs in 1 per 8,000 to 1 per 25,000 live births. It is thought to develop in the early stages of fetal development. It seems to be sporadic. However, some cases have been seen in siblings, suggesting that there is possibly a genetic link.
What is PUVs.org?
Here, and on the PUV e-mail list, parents who have children or are expecting a child with some form of congenital urologic and/or renal anomaly such as PUVs (or any sort of obstructive uropathy), Prune Belly Syndrome, VATERS, or other problem with similar symptoms before and/or after birth, can find others who understand the wide variety of issues that can come from the various problems brought on by these anomalies. We also hope to give support to parents who have lost a child to these potentially fatal birth defects. Although these syndromes are rare, there are parents out there who have been where you are. Welcome to our site.
I'm Shelly Dowdle and I started this group in 1999 when my own PUV "baby" was 7 years old. We had been told that Bryan would be stillborn or die soon after birth. Somehow his lungs formed enough for him to survive, but he was born with kidney failure. After over 4 years on dialysis and many surgeries, I was able to donate a kidney to him when he was 5. He is now almost 20 years old and doing great.
Those seven years I felt so alone, not knowing what was going to happen, worried about what might happen. Now I hope to help those who are just starting on this long uncertain journey as well as offer a home to those who've walked as long as we have. No one should be alone in this.